Many families ask us what happens to the DNA/blood samples and natural history data we collect and whether we share that material with other researchers. We use the samples and data for the research we do at OHSU to better understand NBIA disorders and find treatments, but we also share them with researchers nationwide and worldwide. To give you an idea of the collaborators we send anonymized material to, the map below shows all the locations to which we’ve sent DNA/blood samples and/or data in just the past year and a half! Some of these researchers are collaborators we’ve worked with for years and others are new researchers or researchers who are just starting to take an interest in NBIA disorders.
Locations where we have sent data/samples from Jan 2018 – June 2019